Updated: Jun 12
“This doesn’t apply to me”, I can imagine some of you saying. so many people related with what we are going through, with the care of their diabetic animals, and apologizing because it’s the only way they could relate. Their tears & frustrations, mimicking mine, was motherhood.
Motherhood is caregiving, and often without reward. Mother’s Day, is everyday, for a lot of us. The worries, work, fear, anxiety, joy… It just keeps going, so I didn’t get offended when people said “I’m sorry, I’ve only dealt with diabetes with my dog”. Don’t be sorry. The empathy was appreciated, because my daughter doesn’t talk. She has no idea that she has polydipsia, she just knows at some point I’ll give her water. She can’t say “this is polyuria!“ or “mom change my bed!“, she is at my mercy. So, it’s quite similar taking care of her, because it requires constantly thinking about making her comfortable.
Being dehydrated is a miserable feeling, been there, and I can’t imagine months in that state! Having wet clothes on gets irritating, so I have gone through an amazing amount of diapers in the last few months. She’s worn two diapers, since January, to prevent soaking her wheelchair & clothes. That would irritate the hell out of me, but not like being wet.
So her diabetes diagnosis was heartbreaking! More stuff... ”She can’t catch a break!“, I screamed in my car. My brain went back to nursing school, while I sat there and asked the first question I always asked when the body isn’t doing what it’s supposed to do “why?”. It didn’t take long to remember the basics, and it took even less time to start asking questions.
1. Is this permanent
2. Why are these results elevated
3. Are her organs ok
4. what’s the plan of care
I got scared, because of what I know from personal experience, knowing that some people manage just fine. I got anxious realizing, the people who manage this disease often have support. I panicked when I thought, “this poor baby is about to be stuck 13 times a day!”. That means, I have to be there to do it when she’s not staffed. I love my daughter, but I look forward to real breaks. I felt guilty for considering that, but who else will?
Another thing that came to mind was, “I mentioned this months ago!!!”. Doctors leaning in your face, to be sure the smoke flows perfectly up your ass, is annoying. No continuity of care is also quite agitating. Denial, and the quickness with which they will evade any responsibility, is on brand. They’ll also toss a parent under a bus in a heartbeat, rather than say ”let’s go back and see what went wrong”.
I said all of that to say this, your feelings are valid. There is no off day for many of us. Parents will bail, partners will opt out, folks will act like they know your kid better than you and the advice will pour in when you haven’t asked.
I messed up, by not yelling sooner, because I have mentioned her weight-gain/fluid intake/urine output/diet/discomfort… all of the things. I have talked to over four nutritionists, asked for changes more than once, only to get the same dismissive ass reply “we’ll look into that!”, which means “she’s just a mom.”.
May you never know what it’s like to have to go against some of the ”brightest physicians” in this country, because you will shed more than tears of pain. It’s been months! Having my degree wouldn’t have helped; being nicer would’ve kept getting me dismissed; suggestions only make them avoid you; but those angry tears… My “who’ll bail me out tears”, streamed down my face, like two lactating boobs, of a breast feeding mom stuck in rush hour traffic.
“😭 they aren’t listening!”, I texted a friend.
“Keep your composure”, she responded.
She wasn’t wrong. They definitely don’t want to listen to hysterical parents, so I pre-fussed & cried, before I ever left. It was the “this is the nature of the beast” comment, the doctor made, that changed my expression. “What are your concerns”, the NP asked. She didn’t intend to do anything, but to dismiss them. She claimed a recheck of her liver showed nothing. I hadn’t heard about the recheck. “I’ll tell the doctors your concerns about her pancreas, and the nutritionist wants to talk to you.”. There have been several nutritionist, since December, and it’s always “that’s something we can look at.”. 👀 Dismissals…
My voice changed, when I took her in there, in a state of homeostasis, and the NP stated “we need you to be consistent, so we can adjust this insulin.”. I very calmly told her “I’m not waiting on y’all, because my child is staying dehydrated when her glucose is at 300, 400, 569! I gave her the insulin. She fasted last night, woke up with a BG of 90, and her sodium is 149!” They didn’t do that!!! They wouldn’t have, her mother did. They’d have just added more insulin, essentially doing the same thing and expecting different results. Ahhhhhhh!!! These fucking people.
I ran into a friend on the way out, and I know I was walking hard, looking frustrated & completely angry. “I can feel your energy”, they remarked. It was all over their face too!! Two parents, heading home with their children, after going toe to toe with “the best”, and we were worn out.
There are rooms, with parents sitting bedside, hoping they’ll “just listen!”. Today, I’m imagining my daughter’s system is feeling worn, but wanting to correct. Her pancreas like “whoo!”, this feels semi right, and her liver also wanting some help to clean up after the storm. They’ve both been working overtime and could use a break. Perhaps her blood stream, after becoming accustomed to such high glucose, is flowing more like a lazy river & not a swamp filled with waste.
She was snoring when I gave her her meds this morning. I slept, for the first time in days. I didn’t even jump up & check her glucose, mid morning, like I’ve been doing for days. There was no fear of walking in there, and finding my daughter in a diabetic coma.
This may not be the end, but it’s a restart for her body. The pancreas, & liver can suffer permanent damage, but I am hoping that didn’t occur. Hopefully, she was thinking “let me hold on, until they figure this out!”. She’s so mighty!! She’s been dealing with this for months, diabetes, now let’s see if this one little tweak will give Doodle some relief. She deserves it...”
Update: The endocrinologist finally said “she isn’t diabetic.”. It just them some time. Doodle has been off insulin but, had we waited on that call, to take her off, she’d have been stuck over 50 times, and had just as many doses of insulin.